Elder Grief, Part 2: Managing Care Provider Hand-Offs

Caregiver and Her Mother

The multiple griefs of the very elderly are shared by their adult children who, with increasing frequency, find themselves in the position of both caregiver and healthcare advocate.

This is certainly the case with my mother and me. And I have to say that—as heartbreaking as it was to lose my husband to cancer when he was not quite 56—being my mother's companion and support as she deals with multiple chronic conditions and painfully progressive frailty is more difficult.

With her fall in late May, we have entered the revolving door of trips to the Emergency Room, hospitalizations, and rehab in the nursing home that is so familiar to caregivers of aging parents. Several of my friends have already made this journey and we all agree: "It's going to be this way until it isn't." Which means that I can expect more such episodes until some event or medical condition becomes serious enough to end my mother's life.

Mercifully, she does not fear death itself. But the process of getting there really has her concerned—not only for the severe arthritis pain she realizes is going to be her constant companion, but also for what she perceives she is "doing to my life."

I remind her that caring is what love does and what families have always done for one another. What makes the task especially challenging these days is that medical technology has made it easier to keep sick bodies alive and more difficult to bring comfort and compassion to those who suffer.

Unless—and this is absolutely key in my opinion—family caregivers commit to the responsibility of becoming healthcare advocates.

What this means is: If your aged parent or loved one has entered the process of life-limiting illness, you must learn everything you can about their condition, care options, and their preferences for when and how they wish to be treated. And then be available to advocate on behalf of those preferences whenever care is provided—in any setting.

I did this for my husband throughout his illness and passing from cancer. The fact that he had a single condition and we had the support of hospice made the process much less complicated than my mother's. It also gave me an opportunity to learn a bit of medical lingo, to observe really good care in action, and to understand the difference between curative and palliative treatment.

That difference is the subject of a future blog. What I want to talk about here is the role of the family caregiver/advocate in navigating a healthcare system that is already overloaded, severely regulated, and that constrains doctors in their ability to spend the time necessary to provide compassionate attention, especially to the very old who frequently have trouble understanding their conditions and options for treatment.

In a nutshell, here is what I learned while camping out in my mother's hospital room during the several days she spent having her pain managed and blood thickened prior to surgery for a compression fracture in her spine and then her subsequent three weeks in rehab to regain her strength and balance:

Good Care in Action

1. There are lot of really gifted, extremely dedicated medical professionals working today.

2. One of the biggest challenges for them—which becomes the main point of concern for caregivers and patients—is successfully completing the hand-offs from one level of care to the next. This includes but is not limited to:

- EMTs (ambulance, fire department) to ER doctors
- ER to hospital admitting physician and/or hospitalist, physician's assistant, and nursing staff
- day shift to night shift nurses and back again
- hospital to rehab and/or primary care physician
- any of the above to specialists, diagnostic technicians, and physical & occupational therapists

3. Even the best medical institutions are internally focused. Western medicine is designed to address individual or sequences of symptoms. It is a linear, mechanical model that is very good at fixing parts but not so good at dealing with whole persons and their families.

4. Therefore—and this is my main point—a caregiver/advocate must understand that he or she may be the only person who is watching the entire treatment process and who continues to see their loved one as a human being rather than as a collection of symptoms or body parts that aren't working properly.

Caregiving Essential Reads

Jenga and the Caregiver's Journey

What Is an End-of-Life Doula?

In other words, if you are in this position, you must become the glue that holds the process together. You must be the one who helps the wonderful (or not so wonderful) care providers to do their jobs better because you continue to inform each new practitioner about both the content and the context of the patient's situation.

This also allows you to keep the patient involved in asking questions, sharing information, and making decisions about their own care. This is a skill that hospice and palliative care personnel have perfected and that families must learn if we are to avoid the potential calamities of wrong medications, inappropriate or unnecessary tests and procedures, and failure to address pain and suffering wherever and however it occurs.

Despite expanding government programs, it is not possible to institutionalize compassion. On the contrary, it appears to me that many regulations and procedures actually hinder good medical practitioners from providing good care.

Changing the system to be more attentive to patients as people is a hard sell because many decision makers are not informed that the best care is often also the most cost effective. (See my article on The Best Care Possible by Ira Byock.)

In the meantime, we who are family caregiver/advocates can influence the immediate care of our loved ones by our presence and desire to collaborate with care providers. Not to blame or interfere—but to adopt a team approach that is mutually enhancing and empowering to everyone involved.

It takes time and effort and is often costly for family members in terms of lost time at work or at home. But the alternative is the potential neglect, isolation, and ineffective (even harmful) treatment of those we have loved our entire lives. We owe them and those who continue to labor in healthcare our full attention and commitment.

In the process we are likely to prevent and alleviate suffering while actually saving time, money, and heartache for the human beings who are doing their best to help other human beings in their hour of need.

Click here to download a Free Caregiver/Advocate Checklist that you can use as a reminder of things to think about when times get tough.

Copyright (c) 2012 Cheryl Eckl Communications, Inc.
Those who are grieving may want to consider Cheryl's three-day retreat, "Transforming Deep Loss into Power, Meaning & Peace" August 23-26 in New Mexico.